Each winter would begin with a seemingly never ending cold, that would almost always turn into bronchitis. Eventually it was suggested I take an inhaler every day.
When we moved back to Nebraska 3 years ago, I had a case of bronchitis that I could not get rid of. Eventually it became pneumonia and required four shots of rocephin injections, lots of antibiotics, breathing treatments, oral steroids...blergh! After I finally got past this, it was recommended I get the pneumonia vaccine, however I had a bad reaction to it. This vaccine lasts for five years typically, but due to my reaction, I'm not able to have it again.
Meanwhile in heartburn land, I was having more and more constant heartburn. It didn't matter what I ate, everything seemed to burn and come back up. My Protonix was increased to 40 mg twice a day, a steroid inhaler twice a day, prescription Zantac 300 mg at night. Eventually I couldn't even lean to my right without stuff coming up--you could literally listen to it moving in my chest. I began sleeping propped up on our couch on nights when it was bad. I was very fortunate that my medications did control my heartburn. When I was not on these medications, I felt like a dragon--breathing fire all the time. Constant throat clearing, lots of coughing and about once a week, I would wake up in a coughing fit feeling like there was 'vomit' in my throat. I eventually figured out that it was stomach acid coming up and I was choking. So I was waking up choking--awesome right!?!?
Josh and I decided about two and half years ago that we'd like to try to have another baby, but we wanted to get this acid under control as I couldn't imaging going through another pregnancy with these symptoms. We started seeing another GI specialist in our area who did another endoscopy and kept me on the same medications and I was basically 'maxed out' in what I could take. My endoscopy showed a small hiatal hernia (very common) and some damage to the esophagus from the acid reflux. It also showed that my lower esophageal sphincter didn't work, which is what causes GERD.
In the meantime, I would have esophageal spasms, discovered after taking a long car ride and a lovely trip to the Rapid City, South Dakota ER. We realized that sitting for long periods of time also caused a lot of pain, including sitting at my desk job. So now car rides had to be broken up so I could walk around, which should have worked out well with a toddler who should need bathroom breaks, but Jolie is a crazy toddler who rarely goes to the bathroom! Instead of toddler breaks, we had to take Lindsay breaks. I was very lucky to have an understanding workplace that let me move my desk up higher so I could stand more at work. This all helped but the symptoms were still there.
My GI specialist sent me to Omaha to have manometry and pH study. It's a super fun two-part test. The manometry was first and you have a tube placed through your nose into your stomach. Then you swallow saline solution several times and the tube monitors how you swallow. This takes about half an hour if you are a good patient. After this is completed, you do the 24-hour pH study. A smaller tube is placed into your nose and down to your stomach. Once the tube (which they will call a wire, but when it's in your nose, it feels much bigger and I would definitely call it a tube!) they will tape it in place so it's behind your ear. This is hooked up to a monitoring box with a few buttons that you press while you are having symptoms. You wear this and go about a typical day for 24 hours. The looks you will receive while wearing this are rather comical and after awhile it was even fun to watch people kind of freak out and treat you like you were some walking time bomb, especially at the mall!
After all this was completed, I went back to my GI doctor for the results. The pH study was normal but my manometry showed some low motility, meaning my esophageal muscles looked weak and weren't pushing things (food and drink) down to my stomach like it should. He said this was concerning and wanted to consult with some other doctors, but if he had to guess, he thought I had Systemic Scleroderma. He wanted a month to 'think about it' then he's follow up with me once he decided who to refer me to. So in this month, I start researching and Systemic Scleroderma is an auto-immune disorder that hardens your organs. It's kind of horrible and typically the life expectancy is only about 5-10 years and it's a slow and painful way to go. So I was kind of freaking out. After the month was up I called his office non-stop to see what his decision was. After a couple of weeks (yes, weeks!) he said he was referring me to a rheumatologist who could look into this further. Not going to lie, I had been sick about this! What do you do when you find out you may be in for a very rough future with only 5-10 years left? Should I keep working? Should I stay home and spend as much time with my family as possible? It was a roller coaster of not knowing and lots of unanswered questions and prayers.
I met with the rheumatologist after anxiously sitting in the waiting room. Expecting the worst, I explained how I ended up in his office. I was so relieved when he even chuckled at the idea I had Systemic Scleroderma. He could tell by a few simple tests and checking my fingernails that this was not the case at all! Biggest sigh of relief EVER! Ironically he had gone to medical school at Creighton and knew they had a great Esophageal Center that was at the top of their field. After less than 15 minutes with him, I left with a referral.
Sometimes it's crazy the curve balls that God throws your way. But when you finally see the big picture, you realize He had a plan the whole time. It just makes you smile.
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